This is a preview of a new set I’m currently editing for DreamWorld. This set will be important to the entire series as it marks the entrance of the first non-benevolent character.

At first I had envisioned this character, whom we only get a glimpse of for the moment, as a more Puckish, trouble-maker character, but as I worked on the costume and planned the shoot, I was also watching the first few weeks of True Detective. True Detective (one of the most original, mythic, challenging, well-acted and completely-fabulous-in-every-way show I’ve seen in a long time) had already begun making dark allusions toward The King In Yellow, and I found it seeped into what I was doing. And the darker I took the character, the more right it felt, so it was perfect timing on the part of the universe.

My model for this shoot is the incomparable Dan Donohue, an actor known for his extensive stage work, including just about every Shakespeare play you can think of and Scar, in Disney’s Broadway production of The Lion King. Dan is currently rehearsing for the Oregon Shakespeare Festival where he will play Richard the III in Richard the III, along with Mr. Murry in A Wrinkle In Time. While Dan himself is one of the sweetest, sincerest, most lovely and generous people I’ve had the pleasure to work with, he has the magical ability to summon inner darkness on whim. I had him start the shoot a little more Puckish and less evil, and let him get more and more dangerous as we progressed. And, of course, I ended up loving the darkest shots the best.

I have the wonderful problem of having too many wonderful images to choose from, but I’ll get by somehow. I wanted to send this one out into the world today, not only to harken the rest of the set, but to celebrate Dan’s appearance on Brooklyn 99 tonight! It’s a fantasic comedy in its own right, and Dan will be a great addition. He’s one of those all-talented people who is good at just about everything. It should be a lot fun to watch, especially since Stephanie Beatriz, aka Rosa is his real-life girlfriend! Think Rosa will warm up to him? Let’s find out by watching tonight! 🙂

* * * * *

In other news, there are some new ME/CFS developments which could be incredibly damaging to how the medical communities, and in a trickle down way, the public in general, think of us and treat us. The short story is that the government has hired a new commitee to come up with a new definition for ME/CFS. Not only is this completely unnecessary as we already have two extremely comprehensive definitions in the International Consensus Criteria and the Canadian Consensus Critera (both PDFs), but because the team of 15 people they have assembled is comprised of only 8 ME specialists. I’m having trouble finding the data at the moment, but the remaining specialists in the team may not all even be doctors. This does NOT seem like the optimal group.

With the pittance given to ME research in the US, it seems absurd to spend nearly 1/4 of it reinventing the criteria wheel, and even more absurd when so many of them had no prior knowledge of ME as an illness. The ineptitude of the group can be read about in the sample letter below.

There is something we can do to combat this nonsense. You can go to: http://www.contactingthecongress.org/, type in your zip code and find your representatives. Email them the following:

Recently, the IOM released its report on Gulf War Illness recommending that the illness be named “Gulf War Illness” and that the two existing case definitions be used. In short, the IOM has done exactly nothing since they were hired four years ago– for $840,000 – to come up with a case definition.

The illness, they said had “too many symptoms.” HHS has now hired IOM to “define” Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – another complex illness with many symptoms – to the tune of 1 million dollars. And, like the committee hired to review GWI, the IOM committee for ME/CFS is primarily composed of non-experts – people who have no research or clinical experience with the disease.

Fifty of the world’s top ME/CFS experts have formally protested the IOM contract to Secretary Sebelius. They have pointed out that there already is a case definition for ME/CFS designed by experts, the Canadian Consensus Criteria, and that having non-experts devise a new definition will set research and patient care back by decades. These experts are backed by thousands of patients, some of whom publicly voiced their opposition to the contract on January 27, 2014 at the IOM public meeting.

Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans’ Illnesses says, “The conclusions of the report show that it was a waste of money. The committee never had the expertise or the process to do a case definition.” The current IOM process to review and redefine ME/CFS is an even bigger waste of money. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose.

Please support us by asking HHS to cancel the IOM Review of Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to follow the recommendation made by the experts: Immediate adoption of the Canadian Consensus Criteria for ME/CFS.

The implications of what this group decides could be devastating to the already disadvantaged ME/CFS sufferers. You can, of course, add your own details, but the letter above is a good sample. One thing we have seen is that this group can respond to public pressure and outcry, so let’s make them respond!

I like to check my blog statistics every few days. You’re shown a wealth of information, some helpful, some less so. In theory you can use this info to fine-tune your posts to get the maximum response… for me, it’s mostly just interesting, as I’m going to write what I’m going to write, regardless of how popular it is or isn’t.

One of the pieces of information it shows are the keywords people type into search engines which lead them to my blog. By far and away, the most frequent phrase that pops up is “Veronica Ricci nude” or some variant thereof. For a long time, the second most common phrase I’d see was “cyborg costume” (because of this photo); currently, people looking up things about Jack Hanna and Blackfish come my way a lot. Sometimes the phrases are weird and creepy, but it’s still always interesting for me to see what people are looking for when they, intentionally or not, find my blog.

Recently I saw a very new phrase come up: “I have Chronic Fatigue Syndrome and I want to give up.” My heart just about broke. So if you’ll indulge me for a moment, I’d like to address the person who typed that.

I know how you feel. This is a shit hand to be dealt. It’s not fair, and it’s not your fault. I understand why you feel like giving up. It’s something everyone with any chronic illness of this caliber has to deal with. The idea of having to fight the same dragon every day for the rest of your life is utterly overwhelming. I think of it like the disease form of water torture; it’s not so much the individual moments which break you, but how they build up on each other.

I hope that whatever you found on my blog gave you some hope. I hope that at the very least it helped you feel less alone. I wish that I could promise you that there will be a cure soon, but we don’t know. Regardless of what your precise situation is, you don’t have to bear it all yourself. There is a wealth up support available online, and I personally have found great help from seeing a therapist who is a perfect fit for me. You can also contact The Samaritans if you’re feeling really desperate. I’ve done so myself on more than one occasion, and they really do help.

I would like to hug you and tell you everything will be ok. Since I can’t, I hope that you can feel like love and kinship I am writing this in. You are not alone. I hope you’re able to find the strength to keep going. Just as much as it becomes so overwhelming to think about the rest of your life being like this, I find it more bearable when you concentrate just on today. Just worry about getting through this one day. That can be more than enough overwhelming just on its own without projecting into the future. I hope you come back, read this and it helps you, even a little bit. And no matter what you feel from the people who surround you in your daily life, please know that I at least love you, and I care about you.

If you’d like, you can email me directly at sarah@sarahallegra.com. You are not alone, and you are loved.